Wednesday, January 6, 2010

Loving a schizophrenic

The story of one man's love for his mentally ill wife as they tide through with inadequate assistance in Raymond Fernando's own words.

This article is written by Caregiver Raymond Anthony Fernando and has first been been posted on The Online Citizen website on 23rd December 2009.

I met Doris on Good Friday 1974. She was 20 years, a young, sincere and caring woman. But three years before, she became stricken with schizophrenia.

Schizophrenia is perhaps the most distressing of all mental disorders. It is a complex illness that affects about 1 out of every 100 people during their lifetime. People with this disorder suffer from difficulties in their thought processes, which in turn lead to hallucinations, delusions, disordered thinking and unusual speech or behaviour. Its effects are confusing and often shocking to both families and friends.

Despite knowing this, I decided to take Doris as my lifelong partner. We got married in November 1974, after she turned 21. I was 23 years old then.

Many people have asked me why I willingly married Doris despite knowing of her mental illness. My answer to them is a simple one: If schizophrenia is part of the life of the woman I love, then it must surely be part of mine too. I do not necessarily like what the illness does to her, but it is her that I love. And that has, and will always be, the guiding, motivation force of my life.

Since I married Doris 35 years ago, I have gone through an extremely difficult and lonely journey in seeking to provide the necessary care and help for my wife. Even our own relatives have distanced themselves from us because they refuse to share in caregiving duties. Furthermore, the social stigma that plagues those who suffer from mental illnesses make it harder for us to seek help from society,

Let's face it - when you are looking after a loved one with mental illness, you are all alone in this world.

Despite the many successes Singapore have achieved, the numerous 'number one' accolades – the best airport, the best port facilities and so on, our country and civil society comes up dramatically short when it comes to the mental health system.

Finding employment is one area where people who suffer from mental illness experience huge difficulties. Many patients are unable to find work; most job application forms require job seekers to declare if he/she she has mental illness, thus placing sufferers of mental illness at a clear disadvantage.

But finding employment is an important part of the recovery process, and helps patients lead a better quality of life. When recovered patients find work, it gives them a sense of worthiness and allows them to be self-reliant. They could take up jobs that are not highly pressured, such as clerical or data entry work. Jobs in the food and beverage industry, cleaning and security could also be offered to these recovered patients.

Yet the requirement for patients to state their history of mental illness would almost certainly prevent them from securing a job.

The usefulness and necessity of this declaration needs to be looked into. Its removal perhaps would go a long way to help people who have suffered mental illness find meaningful employment. If the public sector takes the lead and removes this clause, I have every confidence that the private sector will follow suit.

Financial problems are also very common to patients and their families. While charitable foundations raise funds on a national level for various illnesses, such as kidney failure, mental illnesses do not receive similar attention and support. I myself have made several appeals for money to be raised for the mentally ill, but my pleas have gone unheard.

Yet this is a group that is in dire need of financial assistance. Patients themselves, as I've already mentioned, would not be able to hold down a job. But those who look after them are also heavily burdened; caring for a loved one suffering from mental illness requires dedicated care round-the-clock. As a result, many caregivers have to give up their day jobs, further increasing their financial difficulties.

The government should consider ways of alleviating such financial stresses. One possibility is to offer grants for patients who have recovered from mental illness that allows them to work from home. Patients who have literary or artistic skills could be provided with grants or sponsorship that pays for the publishing of their books or paintings, which will in turn help them to earn some income from royalties. They will feel uplifted and encouraged once people show support for their work.

My wife is a good example. She has benefited emotionally from the success of her books, and is motivated to continue writing. By doing so, it keeps her mind actively engaged, thus preventing dementia from also setting in.

Besides providing financial assistance to patients, the caregivers themselves will also benefit immensely from government aid. A caregiver's allowance, for instance, would alleviate any financial troubles they may have. Such a support scheme will help to raise the quality of caregiving and should not be regarded as a handout.

But sadly, such grants are hard, if not impossible, to secure. Some organisations that I have approached, such as the Centre for Enabling Living, are reluctant to make the appeal on our behalf. Others such as the Lien Foundation and the Shaw Foundation have turned down my request for sponsorship after I wrote to them on an individual basis.

Such difficulties extend to other areas in our daily lives as well. When I wanted to take up a life and medical insurance policy for my wife, insurance companies turned me down. As my HDB flat underwent a lift upgrading programme, I had hoped that a day care centre could allow my wife to use their facilities, as the excessive noise could trigger a relapse of her mental illness. But my request was rejected; I was told that persons with mental illness are not allowed to use their facilities. Although the day care centre management eventually offered my wife the use of their facilities after I wrote a letter to My Paper, I had to decline as I was unable to afford their $900 monthly fee.

Many families who have relatives suffering from mental illness are finding it so hard to cope. I know this very well because I sit in support groups where caregivers often breakdown and cry uncontrollably when they have to struggle in caring for their stricken ones all alone.

Beyond the lack of material assistance, the equally-crucial element of emotional support for caregivers is also very weak. Having witnessed firsthand how my wife has suffered horrifically from schizophrenia, I personally have gone through much mental stress and anguish.

We do not have a system in place where the caregiver is given unconditional support when a loved one suffers a relapse. Each time Doris suffered from a relapse and had to be warded in the Institute of Mental Health, I go through enormous emotional pain. There was no one to comfort me during these most depressing moments. Many a time as she went through electro-convulsive therapy to bring her back to a stable condition, I am left alone without any emotional support.

Even the media is not very supportive. Local television for instance helps feed the prevalent social stigma against people who suffer from mental illness. Mandarin television programmes often use the phrase ‘shen jing bing’, which translates as ‘crazy’, in local Chinese dramas and this insensitive language aired during prime time is not helping to de-stigmatise mental illness in Singapore.

Little wonder why persons suffering from mental illness are always shunned and isolated. And even though I have raised this issue, such as by writing to a newspaper, I still hear this remark being used frequently on television. There needs to be greater public sensitivity to the emotional damage such phrases can do to people whose lives are already greatly strained by mental illnesses.

Raymond Anthony Fernando
Caregiver to Doris


Kelvin Ng said...

Would like to repost this piece on my mental health blog. Please give me permission. Thanks.

rayhope said...

Ok, Kelvin. Go ahead.

Raymond Anthony Fernando